PA and Primary Biliary Cirrhosis of Liver

[Sleepybunny]

Found this article about an assoication between an auto immune liver condition and PA.

ncbi.nlm.nih.gov/pmc/articl...

[Dicato]

Hi Sleepybunny, don’t know if this is relevant, I have suffered for years with what my GPs diagnosed IBS, along with at least 2 episodes of Gastritis a month,long story short after been referred and passed on for numerous test, finally a new consultant said he had looked at my records and without seeing me ( this was a telephone consultation) said he was almost sure I had BAM Bile Acid Malabsorption, I will know for sure next week when I go for NM Radionuclide SeHCAT bile study, I have also suffered with almost every symptom associated with B12 deficiency, was tested for it and told the results were fine,I have got worse as the months have gone on,been trying for weeks to get an appointment to see the doctor to no avail, I think it’s all connected, I asked the consultant could I be B12 Def and he said most certainly as nothing as been absorbed, sorry for prattling on.

[Sleepybunny in reply to Dicato]

Hi Dicato,

That's interesting...thank you for sharing your story and I'm sorry to hear about your suffering.

I've been trying to help someone I know who has gastritis, I suspect they might have PA.

"almost every symptom associated with B12 deficiency, was tested for it and told the results were fine"

Sadly it can be very difficult to convince GPs that B12 deficiency may be a possibility.

UK guidelines indicate that patients who are symptomatic for B12 deficiency should be treated even if serum B12 is within range.

Did you see the actual results?

I learnt from experience to always check results myself after being told everything was normal/no action and then finding abnormal and borderline results when I got copies of/access to results.

Some B12 links that might be of interest to you.

I've assumed you're in UK.

I suggest taking a few days to read through them.

There may be some details in the links that could be upsetting.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

If you suspect PA or have a PA diagnosis, worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has lots of useful leaflets/articles that some forum members pass on to GPs.

pernicious-anaemia-society....

Have you been tested for PA (Pernicious Anaemia)?

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

Some GPs may not be aware that it is possible to have Antibody Negative PA.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Gastrin test may also be useful in helping to diagnose PA

labtestsonline.org.uk/tests...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

Link above has letter templates that people can base their own letters to GP on.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

See section in above link for those with "neurological involvement" if you have neuro symptoms.

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth getting hold of local guidelines for your CCG/Health Board and comparing them with BSH, BNF and NICE CKS links.

It's worth knowing what you are up against locally as some UK local guidelines on b12 deficiency differ from BSH, BNF and NICE CKS guidance.

Hope you are not in UK area discussed in blog post below which has a poor reputation on this forum for treatment/diagnosis of B12 deficiency .

b12deficiency.info/blog/202...

Dietary b12 deficiency is sometimes treated with low dose cyanocobalamin tablets (50 mcg).

My understanding of UK guidelines (see BSH Cobalamin and Folate guidelines) is that B12 deficiency with neuro symptoms should be treated with B12 injections even if the cause is dietary.

Have you been tested for coeliac disease?

UK guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Films and videos about B12 deficiency and PA

PAS conference 2019

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Links below are to forum threads where I left some more detailed replies with lots of B12 info which you may find useful eg more about causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered with unrecognised B12 deficiency for years.